<<Disclaimer: Verify this information before applying it to your situation.>>
 
As promised, the following are comments from professionals on the CEL-
PRO list about oats.  Our own __personal__ decision from reading the
NEJM article and the CEL-PRO discussion is to not yet add oats.   Here
are the factors which concern us:
 
a) Oats seem to have a particularly significant cross-contamination
problem with wheat.  The oats research project obtained specially pure
oats which are not readily available to us, the regular celiacs of the
world.
 
b) The NEJM study had patients with only small amounts of oats eaten
per day, and only for six months.  It could be that larger amounts
and/or longer periods of time will show significant damage.
 
c)  Only intestinal damage was checked. Damage can also occur in other
systems of the body, and we all know that our personal feelings are not
valid indications of whether a food is causing celiac-related damage.
 
On the other hand, newly diagnosed celiacs with flat jejunal lesion
showed recovery of the mucosal architecture whether or not oats was
included in the gluten-free diet.  We all certainly hope that future
research will validate and extend the NEJM  oats study.
 
The listowners of CELIAC take no 'official' position on this issue --
our job is to make the information available to you so that you can
make an informed decision.  So here is their discussion, with minor
editing and the names removed at their request, so that each
of you can judge for yourself ....
 
The Listowners
 
-----Edited CEL-PRO discussion follows. ----
***Disclaimer - this is NOT medical advise, it is a general
discussion of the oats issue.  See your own doctor for
application to your particular situation ***
 
~~~~~~~~~~~~~~~~~1~~~~~~~~~~~~~~~~~
 
I will start off the oats discussion by commenting that this is probably
the single most comprehensive study of the effects of a grain on
celiacs.  The earlier  evidence for oats as a deleterious agent in
celiac disease was based a very small # of patients or case studies.
reading the report in the NEJM this week would suggest that oats are
safe for most uncomplicated celiacs.  There are however some
reservations about the study.  Severe celiac disease was an exclusion,
there were some drop outs in both the oats and the control groups and
patients with complications were excluded.  If the findings are
generalisable to the whole population of celiacs then it would certainly
make life a lot easier.
 
I have a concern about whether oat flour is reliably free of
contamination with barley/ wheat. Also what would happen if we challenged
a celiac with high doses of oat flour, greater than the 50g used in
this study. Also would oat flour protein produce any of the subtle
changes seen in the rectum with enema challenge.
 
~~~~~~~~~~~~~~~~~2~~~~~~~~~~~~~~~~~
 
Here in Finland [where the NEJM study was done] there are mixed
feelings about oats. Our colleagues from Kuopio have done a very good
study, and in fact the study is going on. Five year follow-up results
will tell us more, the authors are this autumn rebiopsing the coeliacs
eating oats. Within our Celiac Disease Study Group we have discussed
this, and we are going to discuss the item within the
expert team of the Finnish Coeliac Society. At this point I want to say
some words regarding children.
 
Today we are not going to allow coeliac children to eat oats. We are
first going to perform a study, our ethical committee has accepted our
protocol.We are also going to look at minor jejunal changes in the
*normal* mucosa revealed by immunohistochemistry. Again, the oats
producer will provide us the oats for the study (same deep-freezed
tested batch through the whole study). If no harm is seen, oats will be
accepted also for children and this is important in our country, we by
tradition consume oats. Then another story is whether all oat flour
products at our market are clean. This is a real practical problem and
we will study this. As you probably know, in Ireland the oats was
contaminated, Dr. Conleth Feighery and colleagues used in their study
oats from a German producer, tested not to be wheat contaminated (from
the fields and mills). The Irish study pointed at the same direction as
the Finnish one (9 adult coeliacs challenged with 50 g of
oats for 3 months), oats was tolerated. The authors also looked for
immunological activation in the mucosa, no changes were seen (paper
presented at the 8th International Congress of Mucosal Immunology, San
Diego, July 1995, abstract Srinivasan et al. Oats cereal is not
immunogenic in coeliac disease. Clin Immunol Immunopathol 1995;76
(part 2):S72).
 
~~~~~~~~~~~~~~~~~3~~~~~~~~~~~~~~~~~
 
I would agree with [#2 above] about caution.  I would like to see the
longer follow up data before telling my patients they can eat gluten.
If oats have a weak deleterious effect it may take a lot longer than
wheat to produce changes that are apparent on microscopy.
Could the use of the gluten reduced starch have had a confounding
effect on the study. The symptom scores seemed not to be very
discriminatory in that the control group in remission had a similar
score to the newly diagnosed celiacs.
 
[editors note -  the Finnish study was of celiacs who consumed low-
gluten wheat starch.  As we know, this is an issue of considerable
controversy.  Many European countries consider this perfectly safe,
but in the US most celiac groups do not.  It the US groups are correct,
then celiacs consuming wheat starch and oats might have abnormal
results compared with celiacs consuming no wheat starch and no oats,
but the Finnish study would not have discovered that since it compared
the oats group to control group which also consumed wheat starch]
 
The low amount of avedin 1.2g of avedin/ 60 grams of oats is not very
much by comparison and may take a lot longer to generate damage.
I am uncomfortable with the conclusions of the authors that it would
help compliance to give patients the oat option with the knowledge
that there is only a little protein in it. Are they likely to be any
more compliant or will they just add oats to their unrestricted diet.
If I am going to recommend to patients that they can eat moderate
amounts  of oats it will be to patients who are most likely to be
compliant with the dietary restrictions on wheat, barley and rye, and
who wil come back for follow up. These are probably not the patients
likey to benefit most from easing restrictions.   Five year follow up
data would be more reassuring. Also the comments about purity of the
oats is important to keep in mind. It would have been interesting to
look at the serological markers in these patients.
 
~~~~~~~~~~~~~~~~~4~~~~~~~~~~~~~~~~~
 
 
I just got back from a meeting in Europe on the epidemiology of Celiac
Disease.  There was a big discussion within the scientific community
present at the meeting about the NEJM paper on oat tollerance in CD. We
all had a mixed feeling about the conclusions of the study and my
position is enterely in line with [the authors of #1, #2 and #3]
comments.
 
~~~~~~~~~~~~~~~~~5~~~~~~~~~~~~~~~~~
 
The results of Kuopio group published in NEJM are probably changing
our dietary recommendations. [The author of #1] has recently
discussed the situation in children. The study has been carried out in adults,
and in adults the demand to change dietary recommendations is strong,
as we have noticed during the last days.
 
I think adult celiac patients can switch to oats containing diet under
strict follow-up. The amount of oats tolerated, the long-term effect
of oats, and the importance of gliadin contamination has to be
investigated, however.
 
I recommend to my CD  patients that they should undergo gastroscopic
examination 1-2 years after starting oats-containing diet. Some
antecedent information of the mucosal architecture should be available
 as well. If not, a duodenal biopsy should be taken even before
starting of oats. By this way we also can observe possible
minorinflammatory changes such as an increase in IEL or alpha-beta
T-cell receptor bearing lymphocytes.
 
If this arrangement sounds too laborious, at least a strict follow-up
by physicians and dieticians are essential. The follow-up comprises
general well-being, signs of malabsorption and EmA or AGA analysis.
 
 
~~~~~~~~~~~~~~~~~6~~~~~~~~~~~~~~~~~
 
I would agree with [author of #5] that it may be reasonable to
introduce to certain well controlled and already compliant patients.
50 grams is quite a small amount and 6 months is not long.  I agree
that in those patients that follow up biopsy possibly including a
more senstive markers for reaction that simple architecture is needed.
 
However I fear that limiting intake to 50 grams, the issue of
contamination, compliance with follow up will be difficult in our
setting due to cost and other factors. Many patients with celiac
disease have little or no follow up.
 
Is any one aware of the % of patients who don't follow up? This is a
difficult if not impossible question in the US due to people moving,
health insurance mandated changes in doctor etc.
 
 
~~~~~~~~~~~~~~~~~end~~~~~~~~~~~~~~~~~